4.29.2010

I recognized something yesterday that I didn't really consider before. Jari is a very cautious kid. Yesterday he had a friend come to play and we went to the playground where they could also ride their bikes up, down, all around. Another classmate joined them on the playground with her little brother, and the four of them started tearing up the playground and surrounding area. By tearing up, I don't mean demolishing, but rather just getting busy having a good time.The girl climbed on top of the swingset, making her way across the high pole. Jari's friend joined her, and even little brother tried unsuccessfully to do so, being too small. The whole time I tried to keep my mouth closed about it being dangerous and to get down, but I refrained. Jari didn't follow suit. Instead, he slid down the slide and started digging in the sand.Later, the kids were chasing each other around on their bikes. Jari's friend came and asked if he could go on the hills, which were housed between a very small pond and the stream, which was not deep. I told him he could, and he happily set off riding along the ditches, up and down the hills, through the edge of the pond. Jari stayed on the pathways, riding along the edge of all the action, his helmet covering his little head.As the races started, and they started playing a form of Simon Sez, I was wondering how Jari would react. In the beginning, he was very cautious about it, riding with precision following his friends, but more on a gentle slope than right down the middle. Eventually, as he started feeling more brave, he ventured after his friends down the middle of the hill, onto the edges of the ditches, and around the pond. When it was his turn to choose, he still followed the pathways in the distance. As the kdis went back to the playground and started jumping from the steps, seeing who could jump the furthest, Jari once again turned away from the game, settling instead on the swings. As the other kids jumped first from the lower steps, and then higher and higher, I was wondering what he was thinking and feeling. Wondering if he recognized his fears. Wondering if he was disappointed he didn't feel safe enough to join in.As I tucked him into bed last night, I carefully posed the question. "So, did you have fun with your friends today?" I asked. "Yes, but mama, I didn't wanna go riding on that ditch. What if my bike tire went too far and I fell in?" he asked. I responded by telling him that if he had fallen in it was very shallow and he'd be okay, but that if he didn't feel comfortable doing it, that was okay too. He went on to discuss every of the above mentioned dare-devil feats, telling me why each was dangerous and why he didn't want to do it. "I could fall and break my ankle and then I couldnm't play soccer. I could crash, and I have a helmet so I would be okay, but they don't have a helmet so they could be dead. (Even though he always begrudgingly puts on his helmet, he still does it, under mama's watchful eye...and he's only one of the handful of kids who do wear one, unfortunately) And I just like to ride around and not do that crazy stuff, he continued.Hmmm, I wonder where that comes from? Does it stem from me always saying Be Careful, and him always being under my watchful eye (I am more present in his play than the majority of the other parents), or is it a personality trait? Or maybe a combination?In any case, though I hope he doesn't feel like the odd man out when playing with his friends, I am glad he has the sense to be cautious. Being a daredevil has it's time and place, but knowing he is cautious and seeing him choose his own road was a good sign for me. He doesn't have to be a follower, but can lead on the easy pathways life's road will take him.

4.27.2010

I am feeling old. It seems like the past year I have aged more than in any previous period of my life. I no longer feel like a spring chicken ready to go out and play, but more like an old hen pecking away trying to just get through the day.This new medication I am taking to relieve the nerve pain I have in my hand and arm is working. The discomfort has subsided some, though not completely, but I am hesitant to say that it is working, as the side effects of this medication are numerous. If the nerve damage remains but the discomfort is relieved, BUT I easily sleep 16 hours/day (not an exaggeration), I fall into doors and walls because I have no balance, I can't focus because everything is fuzzy, and I have a near always stomachache, is the medication then working? Thse are the side effects of a medication to help relieve nerve damage.I feel like I am in a never-ending spiral of health issues. I now need to return to physical therapy 3 days/week (that's nearly a part-time job in itself, by the time I get there, do therapy, and get home), take pills twice a day, and deal with the side effects knowing that it's not actually a cure for my hand, but a lifelong sentence to just control the discomfort that arises from nerve damage. I don't want a control, I want a cure. It feels unfair. I just want to be able to use my hand without pain. But that's too much to ask. A stupid sink and God's mysterious plan took that luxury away from me.I am whining, yes. I have that right, as this medication I am on also has that side-effect. Being cranky and irritable and blowing up at those around you for no reason at all. Just ask my family members how much fun I am to be around. One day I can't sit still and get a single thing done as I flitter around trying to concentrate and then sit down and my eyes immediately close to block out the fuzz, but then my head falls as I head to slumberland. And the next day, having used so much energy the day before, I can't even get up or I fall over from a dizzy spell, if I can manage to wake up enough to get up at all.It's no fun. And though I am going to hang on and finish this out for the five weeks until my next doctor visit, I cannot see this as being an option for the remainder of my life. It is doing it's job half-heartedly in controlling the nerve pain, but my life has become a misery. Nope, not for me. Onto the next option, whatever that may be. Or else I'll just live with it (it being the discomfort and pain), because I certainly can't live with it (it being the pain medication).This accident and the handicap that has been left behind, my so-called hand and arm, have absolutely aged me this past year. I may be nearing the big 4-0, but lately it feels more like the 6-0. I can whine and cry and throw a fit, because this is my life, this is it. And it feels like a big huge lump of a disappointment. Life isn't so much fun.Taking this medication and having a handicap has also opened my eyes to how Kaeden must feel. I wonder how his medication affects him. Does it cause him to feel dizzy, to feel off kilter, to have a fuzz filtering out the world? Does he hate it when people ask about his autism, or bring up the fact he has autism? Does he just wish it would all go away and he could just be? I have always wondered how he feels, as he isn't all that open to discussion about such things (he is unable to vocalize these kinds of issues). Being able to see life through a handicapped, drug-induced haze, I can only hope his life looks mosr positive than mine. I may be whining, but really, this is just NO FUN!

4.23.2010

My stomach is tied in knots. Today has been a stressful day for me. Earlier in the week I spoke to our neighbors about our plans to take over our yard. Yes, we have a yard which is twice as big as the one we now enjoy, we pay our taxes for that yard, yet we are unable to use it. Why? Because 20 years ago a shed was illegally constructed on the border of our land, and because of the way the houses have been separated and land issues evolved, we are required to give a 3 meter thoroughfare to our neighbors. As is the neighbor on our left, which she has done by creating a driveway. We give our three meters, but at this moment it is through the very center of our land, and I am hoping to change that to create it on the back side of our land, and give us use of our land to build a larger garden area for us to use.So, this morning, after speaking with the neighbors who have the illegal shed earlier in the week about the circumstances, I went to discuss this issue with the local policeman. He is a policeman assigned to our village for all village issues, and I have come to know him through my crossguard duties. So, I went to him asking for advice. After showing him our land boundaries, he agreed that we had the right to recreate our yard, and went to discuss the issue with the neighbors. When he came back to my house to tell me what was said, he told me "I'm taking off my police hat and speaking to you person to person. The best way to solve the issue is to talk about it. The neighbors understand that their shed is illegal and needs to be torn down, but their oil tanks (used for heating) are housed in the shed. If you could all work out a solution so they don't have to move the oil tanks, it would be best." He then put his hat back on and told me the steps I would have to take to legally have the shed removed. It is a huge ordeal and can cost a lot of money, but I am hoping we can resolve it just between the parites involved, and I am willing to give a bit extra of my space in order to let their oil tanks stand.So, after the poilce officer left, I was feeling quite pleased that it could all work out satisfactory for all of us. Fast forward a few hours...the neighbors (both the man and wife, earlier only the wife was home) greet me in the yard where I am working and ask to discuss the situation with me. They are Turkish and the husband doesn't speak perfect Dutch, but seems to understand it, while the wife speaks fluently. He is less willing to tear down the illegal shed. He thinks that if we take over the land on our left and leave the back as it is, everyone should be happy. He tells me how he also gives to allow our other neighbor space to drive through his land, as well as walk to his back door via his land. He keeps walking along my land borders showing me how I can rebuild my land to create room to get through without him having to remove his shed.He is correct in that there is room, but my question is: Why should I pay taxes for my land and allow everyone else to use it, but have no use of it myself? I want to have a larger yard. I want more space to create a larger area to grow veggies. I want more room for my boys to place a swimming pool in the summer. I want to look out while I sit on my patio and not have to look into the clothes on the clothesline. It is, afterall, my land. Why shouldn't I have use of it?So, I told the neighbors after much discussion that I may be willing to give a bit of space, but that the shed needs to come down. I told them that we could do it the easy way and come to an agreement, or we could make it difficult and let a judge decide. They want to erect a new garden shed, plus have the space for their oil tanks. But they want a large garden shed. Not just a small one which I could be willing to allow. They also kept speaking back and forth in Turkish, which I wasn't pleased about. I think they should keep it in Dutch so I know what is being said as well. She didn't translate all that he said as she agreed with him. He also claimed that if we make problems for them in placing a shed, they will make issues for our immediate neighbor and not give him thoroughway on their land. Why is this an issue? His recently renovated garage sits on their property line. In order to reach his garage, he must have throughway through our and their land.So, I told them that we should all think about our options and we'd all sit together to come to an agreement in the coming weeks. On a Friday afternoon when we are all available. Legally the shed needs to be removed. If I don't demand that now, it won't happen (there is a law saying that once a building stand for 30 years, it is considered legal) as the years pass quickly by and it's already been there for 20. So, how much land am I actually willing to give in order to keep peace with my neighbors? Or, should I quit caring about others and just place my new fence and give my three lawful meters and say so be it, this is how it is? It's a bit dependant on what agreement the neighbors bring back to me. If they are realistic and don't try to tell me I should be happy with what I have and just keep paying taxes for them to use my land, which is basically what they told me today, I may be willing to work with them. However, it is my land and my personal space, and I will have use of it in the manner in which I decide. Nobody is going to tell me what to do with my land. But if they are reasonable, I may be able to keep it out of court...becuase though I won't tell them, I'm just a tad bit nervous about it coming down to that. I don't like the idea of court, and my stomach is already turning just from the various discussions I had to undergo today. I'd hate to have to feel the stomach pain I'd have sitting in a courtroom. But, I will....if I have to.

4.19.2010

Our vacation to Germany was wonderful. It seems to me to be one of the best vacations we've had. A great combination of exploration and discovery, but in a relaxed and easy manner. The kids really seemed to get along well on this trip, and seeing them laughing and playing together was good for my heart. There were no major meltdowns and no major problems. It was a typical family vacation and rejuvenated all of us. So, from me, there are no complaints.

However, on the way home, Kaeden had a meltdown. I'm not entirely sure from where it stemmed, other than the boys playing a game and rules changed, and then the game was thrown and from there it all went downhill. I asked Erwin to stop the car, and at the following exit we got off and parked in the driveway of a business. Though I wouldn't call this meltdown one of Kaeden's worse, it ended of fun vacation on a negative note. It's something we have learned to accept and anticipate when something changes (vacation is over, back to home and school), but nevertheless, it still comes as a shock, and still hits you with a blow. Here is the letter I wrote in the car, sitting in the backseat with my son, following our meltdown. I call it ours, because it is never just Kaeden involved, but us as a whole, a family with autism.

Just stopped. I am so angry. Had to get off the highway because my two wonderful kids can't stop fighting. And Kaeden can't keep his hands to himself in which Jari screams like a banshee. So, off the highway to change seats and get them away from each other. When am I going to learn? Even if they promise there will be no problems and beg to sit next to each other, don't do it. It is simply asking for trouble.

So, Kaeden flips out and the thing I was most nervous about was being by the busy road. Cars speeding by as he kicks and screams and hits- I was afrais he would run out there in front of a car. And his mouth- I can't stand listening to how he speaks to us, but most especially to Erwin. The names he calls him are so rude and disrespectful. I actually hate the way they speak to each other, neither of them is respectful, but in this case Kaeden was definitely at fault.

As he it the fence with his belt I demanded he forfeit it before getting back in the car. His tantrum continued and when I moved Jari's booster seat to the front seat and saw Jari just standing there on a rock, off to the side, observing the entire situation unfold. His hands clutched in his pockeets just watching. How do I feel? Sad, sad that at 8 years old this is the only life he has known. But even more so, sad that being this is the only life he's known he still hasn't figured out how to help prevent these scenarios. I don't blame him, not at all, but I can't understand why when he sees such an ocassion arising, he doesn't know enough to stop.

It's often, though not always, clear that Kaeden is ready to explode. Erwin also has difficulty with this, though in his case it is more that he believes Kaeden must obey and must succumb to the rules. I just don't know. For me, I'd rather enforce only when it's something important and forego the fights and meltdowns and the ensuing feeling of sadness and hurt which remains in my heart long after the tantrum has subsided. None of us is right or wrong, I suppose, as we all must do what we have to do to live with autism. In general, though, Kaeden is most calm with me. There are many factors that contribute to that. All I know is that autism is the culprit, and because autism is a part of who Kaeden is, he gets the blame. Should he? I'm not sure- sometimes yes, sometimes no- but even with autism he has to learn to live in the world according to the rules society sets forth. Or we as parents set forth. Or teachers set forth.

Kaeden seems somewhat more controlled when he has a meltdown compared to a couple of years ago, but they still happen, and when he is stilled, calm, and happy again 20 minutes later. my heart is still beating double time, my blood still pulsing hotly through my veins, the 20 minutes a lifetime, a mixture of fear, anger and pain, added to the guilt I feel that all my entire family must go through, each of us in our own way, as a result of autism.

Erwin let me handle things during this episode-he let me take care of business and get Kaeden calmed down so we could go, and for that I am grateful. As we continue on our way Jari is role-playing with his stuffed bear, Erwin driving us home, Kaeden watching a movie as he points out a hot air balloon he sees in the blue, sunny sky above us---and I? I just have tears hiding behind my eyes, knowing this won't be the last time, certainly wasn't the first time, and I once again curse autism as we head towards home, our family, vacation nearly ending, once again autism ending it in the way which is so typical, in the manner of which we have all become accustomed, a change on the horizon upon which autism cannot bear, but must. Life goes on----

And that is my take on our last autistic meltdown. And even so, it was a truly wonderful family vacation, one I will treasure forever, remembering my boys chasing around the playground, their laughter filling the silent air.

4.09.2010

I learned something new last night. My husband came home from work and told me about the krakers (squatters) occupying the building next to the one in which he works. I have never heard the term kraker, and had no idea what he was talking about. He went on to explain what they do and the legalities of this practice in the Netherlands. I was surprised.

The law allows squatters to legally enter any building that has been uninhabited for more than one year. Until there are new renters or the building comes into use, they have the legal right to occupy the building. This law comes from the 1970's when there weren't enough homes for all the people, and uninhabited buildings became places for them to call home.

The building on the terrein where my husband works is an office building. It is huge, but has been empty for over a year. And in one way or another, these krakers have entered the building and now call it their space. Does something seem wrong with this picture?

To me, I find this practice one which puts me at a disadvantage. I have to pay for my home, taxes, power. If I was a squatter, I wouldn't have any of these costs. I may have to move around a lot, or get caught up in riots with the police, but legally they can't force me out without notice. And in an office building? How can that be considered proper housing? It seems a waste of government money to place protective forces to guard these buildings. And what about once they need to be forced out in a riot situation?

I can understand the squatters making their point, saying that these buildings shouldn't be left to rot and create situations such as this. That buildings have a purpose to be used, and not sit empty causing neighborhoods to become polluted. However, this practice seems unreal to me. They just overtake a space and call it their own? They don't follow the rules set forth by society and create a home of their own? I had no idea such a thing was legal.

So, I learned something new today. I certainly won't be leaving my home empty for year. I'd hate to come back to force a new family out of my own home.

4.07.2010

Today marks a first for us. Today, after soccer camp, we'll have a special guest come stay at our house. Today, Jari has his friend coming to spend the night...for the first time ever! And boy oh boy, is he excited!!! All he has talked about for a week is the upcoming sleep over and what he and his friend will do. All he has considered is where they will sleep, what they will eat, what movie they will watch. He is so excited!Many of Jari's plans have to be put on stand-by due to Kaeden's behavior issues. Having friends come spend the night is not an option when we don't know how Kaeden will react to the extra stimulus, what may cause him to blow. It isn't fair to our youngest, and though we realize this, it's also unfair to put another child into a situation where he'll be subjected to an outburst. So, though many of Jari's friends have had sleepovers, Jari has of yet been unable to have this rite of passage. However, that all changes with this afternoon. While the boys are at soccer camp and Kaeden happily and safely tucked away at his home away from home, I'm going to set up a tent, blow up some airbeds, and create a mini-camping for them to arrive home to. Jari plans to have his friend help him work on his hut in the farmer's field, but after dinner it will be a movie and popcorn and cookies in their little getaway hidden in Jari's room. "Can we stay up til 10 mama?" he asks with his eyes shining. "Can we eat cookies and have hot chocolate and watch a movie til it's dark?" "Do you think Xander will like sleeping in a tent? What if we get scared? Can I wake Xander up in the morning? What if Papa is already gone to work when we wake up and Xander won't even see him? Do you think my pyjamas will fit him (in case his mama forgets to pack his, of course.)?"The questions are unending, the excitement filling his mind and body with stress. He can't believe this little treat has been offered. He can't believe he's finally having a friend come spend the night. He can't believe he's finally big enough to take on this type of party.And his excitement is working it's way over to me. "What should I make for dinner? Do you think Xander likes....., are you guys going to take showers or a bath after training? What movie are you going to watch before bed? Should I let you stay up til 10 when you have another full day of training tomorrow?" This sleepover party is exciting. I remember back to my own sleepover experiences and how much I enjoyed spending the night with a friend. How much fun it was to have a friend come stay with me. How the rules changed and gave me more freedom. And now, it's happening with my son, for the first time ever in our home. I better get that tent set up as promised, because though it's just hours away, 4 pm can't get here soon enough! It's so exciting!

4.02.2010

It has been a very big, busy week. Tonight, I sit alone as everyone sleeps in bed, after pulling out the vaccuum to clean up glass that shattered from one end of the house to the other as Kaeden dropped his bowl on his way to bed. As he started to defend himself and explain what happened, I quietly told him that it was an accident. A simple accident and accidents happen and he doesn't need to explain. Though I become quite stressed in the face of messes and broken objects, never have I chastised my kids when it's an accident. There is no reason to feel guilt for something that just happened. But it stopped me for a moment, his nervous explanation, wondering why he was so concerned when he's never gotten in trouble for something like that. And I considered all the things that break in his presence, all the things he breaks in anger, and it made me realize that he feels the need to explain to come to terms with what has happened. So often he has to explain his acts, so often it wasn't accidental, so often he has to defend himself...this time, I hugged him tight (he let me) and told him quietly that it was okay. I could feel him relax under my arms, his body soften, his breath escape. It made me feel good to be holding him at that moment, realize how much stress he holds inside, how my simple gesture allowed him to just....breathe. I need to remember, try to be patient, allow him to relax. My son just looked at me and answered "Yeah." So simple. So free.

I also discussed something I was sincerely worried about discussing with him. He had off of school today and we sat and talked about our summer vacation plans. I signed him up for a kids vacation camp with one of his friends from school, and he was so excited as he told me about all the fun stuff he'll get to do. I love knowing he has finally discovered true friendship in life. This young man he has befriended, and who has befriended Kaeden, has already managed to work his way into my heart. I appreciate him, allowing Kaeden the chance to have and be a friend. Both of them are so deserving of each other.

Anyway, I booked plane tickets this week for a vacation home. Just for Jari and Mama. I was worried about Kaeden's reaction to this bit of news. He thrives on being with Gramma and Grampa and going back to America. He loves retelling stories of his time there, remembering so much from our life before Papa and Jari, where he lived and what we did. I was afraid I was setting myself up for a very disappointed kid, but he proved me wrong. Initially, I saw his look of disappointment cross his face. He looked down and away, but immediately gave me full eye contact as he asked when we would go. He asked about the logistics, who would take care of him, when he would stay at school, how he would get there. When I told him he would have a full week of vacation with Papa, the look that crossed his face was one of sheer fascination. His smile was bright as he said "Me and Papa can finally have some time to do fun stuff alone!" He continued to tell me that it's been a long time (2 years) since Jari has seen gramma and grampa, and repeated in his own words all the reasons I told him Jari needed a chance to go to America this time around. And he was okay with it all. He was completely and totally okay with my decision. I had absolutely no need to worry, he just accepted that this is how it is, and yeah, I'm gonna have a good summer too.I am so proud of him. Two years ago I couldn't have fathomed him accepting something like this happily, let alone without having a major meltdown. Today, he took the news with a smile on his face, happy for time alone with Papa, happy Jari gets to see his grandparents, happy he gets to go to summer camp with Sacha. I couldn't help but be a bit shell-shocked, but as we shared a piece of cake and cappuccino, I really felt like my son is beginning to grow up. He's coming to terms with how life works, and learning to accept disappointments as well as excitement. I'm not saying everything is perfect, we still have a long ways to go, but these first little glimpses into my son as a man ahve me feeling proud. So proud of all he has achieved, proud of what a giving person he is becoming. Through it all, I must have done something right. Because the young man I spent today with is exactly the young man I have always dreamed he would turn out to be.

In addition, parent teacher conferences were this week and his report card was terrifically filled with good grades. And even better, his behavior for the time being seems to be at a lull, and he hasn't had any threatening outbursts as of late. His one meltdown resulted in him leaving the school building and taking a walk to the animal park on campus. These are the exact tools we have been trying to teach him for years. When the going gets tough, remove yourself from the situation and when you are able, come back and try again. And his finally achieving this, leaving without reacting in violence, is something that makes my heart swell a thousand times. Again, I don't have high expectations, but the fact he was able to do this is just so huge...and I know he can do it again. It's just these little things that show me of his growth, of the possibilities he has contained within, despite his autism.

About Me

Mom, Wife, Daughter, Friend...I could be called each of them, sometimes apart, sometimes simultaneously. Foremost, I am a 40-something woman born in Wisconsin, growing up in the Wyoming wilderness, and transported to Europe after finding my life partner in a wonderful man I now call my husband. Our two boys, 16 year old Kaeden and 9 year old Jari, keep me busy and alive. We are a family of autism, and if trying to discover how to live peacefully with autism; it is not only my greatest downfall, but my greatest success.